Alzheimer’s

I DON’T WANT GRANDPA TO FORGET ME

 

Grandpa and child wading

Children are just as devastated by the effects of Alzheimer’s as everyone else in the family.

August 3, 2012 – Alzheimer’s is, beyond a doubt, the cruelest of all diseases – especially for the family.  Once the victim is well on his or her way into the Alzheimer’s journey it doesn’t seem to matter to them because they don’t see the problem.  Through a clouded curtain of confusion and forgetting, everyone else is at fault as memories fade away into the mist.

Jessica is our youngest and last grandchild.  She arrived on the scene fitting into the age bracket of the next generation.  Enjoying her cousins (once removed) they being our great grandchildren didn’t matter one bit to Jess.  They were family and kids just her age.  It was all right that their father was actually her first cousin even though he wasn’t much fun, but his children were fun. That’s what counted. Nevertheless, one thing was for certain: they all enjoyed Grandpa.

SUPERFLUOUS GRANDMA

As an infant, until she was four or so, Jess was cared for by her maternal grandmother while her mom continued working.  Surrounded by family everyone fit neatly into the puzzle. She had aunts, uncles, cousins, mommy, dad, grandma and grandpa.  But then there was another grandma – an extra grandma – superfluous.  That was me, and somehow I just didn’t fit.  Being cared for by Grandma C. and having a Grandpa R. the pieces fit perfectly: Mommy, dad, grandma and grandpa. Even though I was Grandma too she eyed me with suspicion.  In a group hug I was allowed, but an individual hug – mmmmm — no — maybe next time.  I told her parents I was okay with the rejection knowing that Jessica had to figure out for herself just exactly where I fit into the family.  Eventually she realized there was no grandpa for Grandma C., and I belonged with Grandpa R.

GRANDPAS HAVE LAPS

A family showing off their 72-hour kits

Family night was a chance for everyone to get to know grandpa better.

For a few years into the disease as Alzheimer’s diminished Grandpa Ken’s abilities Jess and the cousins didn’t seem to notice.  Family nights were the same and if Ken didn’t participate in the games it was all right.  Besides he had a lap and whoever found it empty would climb up, snuggle in and hand him a book.  Reading he could do for a long time.  I also believe it was good for him to hold a little one and feel the warmth and normalcy conjured up by close contact with a miniature human being.  For a long time Jess and the cousins were comfortable with him not realizing he was beginning to forget their names and who they were. Continue reading

Originally posted 2012-08-01 00:00:00.

EVEN 33 HOURS CAN BE A VACATION

My grand daughter Katie and her new husband Brian

My granddaughter Katie and her new husband Brian

July 20, 2012 — Alzheimer’s is a prison for the victim and often for the caregiver.  As caregivers, especially those of us who care for our loved one at home, we struggle against the confinement.  Keeping our head above water in the never-ending stream of responsibilities and duties we must fight diligently to give ourselves the needed breaks we not only deserve, but desperately need.  I periodically write about breaks” for caregivers and the different things we can do, places to go and the importance of friends not only to keep us as a viable part of society, but to keep us sane as well.  Undoubtedly, all of those suggestions seem to work for the day-to-day functions of our busy and often stressful lives. Continue reading

Originally posted 2012-07-20 21:21:59.

IGNORANCE IS ALIVE AND WELL

June 29, 2012 – I cried today for Virginia even though we’ve never met.  If she and I were close enough I would

Caregiver crying

No matter what caregivers do, sometimes it’s not enough. It is important to not feel guilt for circumstances beyond one’s control.

have put my arms around her and we would have cried together feeling the despair, the anger and the guilt. I suppose I cried for humanity as well, for its ignorance and for all those who are afflicted with any of the diseases found under the Dementia Umbrella.  I would have cried for the countless numbers of caregivers because it’s the caregivers who feel so responsible living constantly with the “burden” of that insurmountable weight of accountability, and the awful smothering blame we feel when something goes wrong.  What happened to Virginia’s husband James was terribly wrong. Continue reading

Originally posted 2012-06-30 04:37:53.

REMEMBERING MY FATHER

Edwin Weeks with horse

My father Edwin Weeks

June 15, 2012 — My father was a big burley man born at the beginning of the last century. With good looks, little education, and a work ethic that wouldn’t quit he managed to attract lovely Irene, artistic Irene and scholarly Irene. Having one semester of college she continued learning nearly all of her life. Their story is another of Alzheimer’s and love and caregiving.  In spite of his dirt-farmer background with no other experience, the couple moved from eastern Utah to San Francisco where he found sporadic work during the Great Depression. The dollars were scarce, but they managed, barely keeping their small family housed and fed.

THE WAR YEARS

“Give it a try,” Irene advised her hard-working, but reluctant, husband as he read the ad for workers at Vallejo, California’s Mare Island Shipyard, “all they can say is no.” Continue reading

Originally posted 2012-06-16 06:18:22.

THE JOURNEY HOME

KEEPING VIGIL

dawn sun shining through clouds

Though death brings finality to Alzheimer's, caretaking survivors still grieve their loved ones.

May 25, 2012 — For the past few weeks the Alzheimer’s World and Community have been keeping vigil with Bob DeMarco as he waits by his mother’s side.  She is 95 years old. He knows death is near. Hospice is close by and ready when he needs help.  They are still at home: Dotty’s home, the same home where she kept vigil many years ago as her husband slipped away to the other side — to the light Bob explained.  Now, Dotty’s devoted son, after caring for his mother as she battled Alzheimer’s for the past eight years, waits for her inevitable exit into the light.  There were no options, no heroics; Dotty’s system has been shutting down, and Bob was told that it was just a matter of time. Continue reading

Originally posted 2012-05-26 07:02:01.

ALZHEIMER’S: WHEN THE DAUGHTER BECOMES THE MOTHER

adult-child silohuette

It’s a heart-rending transition, but when does it happen that the parent becomes a child and the child becomes the parent?

 

 

 

 

 

May 11, 2012 — There is never a set time for this exchange to happen.  It’s not like turning 18 when you’re miraculously transformed into a legal adult or being 21 and you can toss the phony ID before entering certain establishments previously forbidden, nor is it anything like having that first baby when the full glory of inescapable motherhood is thrust upon you.  The mother becoming the child and the child becoming the mother is an act of acceptance and compassion on the part of the child and never sought after by either adult.  Furthermore, not every child has the calling, challenge or even the temperament to accept the transition.  It’s a journey stumbled into as the older mother slips into a need either through old age, poor health or falls under the dreaded umbrella of dementia, which in our family is and has been  Alzheimer’s disease.

SO….  WHEN?

Was it when my mother, Irene, broke a hip and the doctor forbad her climbing any more ladders.  She had planned on painting the kitchen and felt frustrated at not being able to follow her schedule. To get the job done and soothe her jangled nerves my sister Janet and I painted it for her.  With her strong, but recovering, body and equally sound mind it wasn’t then that Janet nor I stepped forward to become our mother’s caregiver.  Mom wasn’t ready. We weren’t ready either nor had the thought even passed through out minds.  Perhaps it was a few years later  in the car when I suddenly braked and my protective arm flew out across her chest as I had automatically done for my children before seat belts.  Could that have been a beginning or was it when at 85 my mother began to lose touch with reality.

The stats tell us that if we live long enough one half of the population will have AD. In the case of my parents, the stats were right on target.  My father was as sound as the dollar had been long ago, and it was he who made the decision to leave their beautiful country home in Sonoma County, California and move closer to us on the east side of San Francisco’s bay because he could see his beloved wife of nearly 65 years slipping away.  “I don’t want to live with you,” he proclaimed as we searched for their new home, “We just need to be near you.”

ILLS AND BROKEN HIPS

They did well by themselves in the house nearby which was a 15-minute walk or a quick ride for Ken and me.  I saw them every day and whenever Dad called which was the case one evening when the phone rang.  “I think Mama broke her other hip,” he stated.  Already deep into forgetting, the recovery took longer than it should and she never really regained what was lost. Previously, she and I had taken short walks through the neighborhood.  No longer steady on her feet I pushed her along the same route in a wheel chair. Had I become the mother then?  Or was it when I helped her get ready for bed, or pulled a comb through her tangled hair and she screamed like a young banshee, and I scolded her? Could it have been when she needed to be checked by her p.c. and I held her hand during the exam, or the time before they moved when she had a painful kidney stone and I worried about possible surgery?  Was she the child and I the mother? Continue reading

Originally posted 2012-05-12 20:14:42.

MOTHER’S DAY — FILLED WITH ALZHEIMER’S AND HATE

Angry mother tiger growls at baby tiger

Even in the animal kingdom, conflict exists between mothers and daughters. Photo courtsey of Tambako the Jaguar, http://www.flickr.com/photos/8070463@N03/6533105491/

CONFESSION

May 4, 2012 — Reading from the Alzheimer’s Reading Room another caregiver posed a problem to Bob DeMarco stating she was the main caregiver for her mother. Then, without hesitation, admitted she hated not only every minute of her caregiving duties, but her mother as well. She went on in her statement addressing all of the reasons for her emotions, expressing that she and mom had never gotten along, were never close, and now during this time of mom’s need the daughter was filled with resentment, anger and hatred.  “Ouch,” I thought. To further compound the dreary entry I read through a long list of comments stating mostly the same thing.  “Double ouch.” Continue reading

Originally posted 2012-05-05 03:59:46.

ALZHEIMER’S: JUDGING, ADVICE AND MOTHERS

April 28, 2012 — “I don’t give advice and I don’t judge,”said my friend Clement.

woman handing a nickel

Advice, even for Alzheimer's caregivers, isn't worth it unless you pay something for it.

A MENTOR

Clem’s mother had been a mentor for me.  She didn’t know it nor did I.  It wasn’t until she was gone that I recognized the impact she had on my life. Nearer my mother’s age, but a little younger where the generation gap hadn’t felt as vast, or as a teen perhaps I wasn’t doing the distancing thing from Hertha as I was with my mom.  Nevertheless, this mature woman was someone I could sit with hour upon end and bask in her wise and witty wisdom.

A stay-at-home mom with four rambunctious boys and one fragile girl, her prior career was that of a registered nurse turned stewardess, as flight attendants were called when Hertha flew the blue and friendly sky; the medical part being a requirement during the early days of national and international flights on many of the major airlines.  I always wondered if “Personality Plus” was also a requirement because if anything Hertha could have been “Miss Congeniality” anywhere she went.

Hertha’s last years were not spent as a dementia victim which had been the fate of  my own mother so I was a bit surprised recently when Clem winced a little recalling “being there for her” during her later widowed years.  That’s when he said, “I don’t give advice and I don’t judge,”   even though advice from experience was there if he wanted to share. He added how his mother had eventually moved to another state to be close to her sister and another son, Kyle.  “After mom died Kyle wrote me a letter of apology and appreciation for my before years,” Clem chuckled. Continue reading

Originally posted 2012-04-28 02:55:27.

ALZHEIMER’S, CLINICAL TRIALS, HOLISTIC TREATMENTS AND SPICE

ADVENTURES IN HOLISTIC TREATMENTS

Using the spice tumeric has been reported as a possible holistic medication for Alzheimer's.

3/30/12 — Shortly after Ken was diagnosed with Alzheimer’s our grandson Sean called to tell me about turmeric. This was in 2005:  former President Ronald Reagan was still alive and afflicted with AD as was Sargent Shriver and several other well-known people.  It’s been my belief that having celebrity names included under the Dementia Umbrella brought the escalating problem up close and in the face of not only society, but the medical community as well. On the market to fight the dreaded disease were two medications Aricept and Namenda, and then, for me, came a shot in the dark: turmeric.

“The spice,” I asked Sean.  Yes, the spice.  I just read an article where studies have been made in India about AD.  What they found in this vastly populated country is that only 4% of the population shows any signs of Alzheimer’s, where in the U. S. it’s fast approaching 50%.  Scientists have wondered about their diet – so different than the Western diet – and if it has any effect on avoiding Alzheimer’s.  The question of spices was also posed with concentration on curry, of which turmeric is the main ingredient. The article went on to state that UCLA and the VA were going to do studies on the spice – to see if it could be useful in treating Alzheimer’s.”  I thanked Sean, telling him I wasn’t going to wait for studies and would check it out with our doctor.

My dear Dr. Pleasant (as I refer to him) smiled, controlling himself as I told him of the report so as not to roll his eyes, and said something like, “really.”  Not flinching at his skepticism I asked, “What can the medical community do for us in treating Alzheimer’s?”  “Nothing,” he sadly replied.  “So, tell me how much turmeric can I safely give Ken?”  We talked and he checked his computer and I went home happy.  This was something I could do.

At the health food store I purchased some organic turmeric, gelatin capsules, a loading tray and I was set.  Beginning slowly I rationed the filled capsules to Ken which he swallowed along with a bunch of other vitamins and supplements he was taking, and we both felt as if life had given us a weapon.  After all, being optimistic is a good thing.

CLINICAL TRIALS

Meanwhile, my friend Shirley called and asked if I had tried to get Ken into clinical trials.  I hadn’t, but she continued with what information she had gathered and finally gave me a phone number so I could inquire if he was eligible for trials at one of the leading hospitals in San Francisco.  “Call them” she encouraged.  “It might help.” Ken had been on turmeric for a few years.  While I didn’t intend to stop the spice I did call the number and set up an appointment.

Once I had given them Ken’s history, including Crohn’s, the surgery and the loss of three feet of intestine, Ken was given an examination as well as a host of memory tests.  I was very impressed with their meticulous concern, their relay of doctors and the 3-hour time frame for the examination and evaluation, especially remembering how in 10 minutes our HMO neurologist arrived at his diagnosis.  After speaking with Ken and me for a very short period of time Dr. Hurry said, “Your husband has Alzheimer’s,” and that was that.

The clinic doctors explained what would be offered if Ken were to be accepted into the clincial trials and I felt very encouraged and pleased.  I also told them about his taking turmeric.  “Has it done any good,” asked the doctor.  I had to confess that I had no way of knowing because I wasn’t conducting a double-blind study, nor did I have any other basis for comparison.

After all was said and done, Ken was disqualified because of his previous surgery and the questionable ability of his system to absorb any medications taken by mouth.  We were, of course, disappointed, but pleased that we had given it our best shot.  And speaking of shots and patches, there were no other options at that time for any trials’ medications to be delivered to the body other than by mouth.

Even now with Ken, delivery by mouth is no longer simple. Following the severe automobile accident which involved both of us Ken wasn’t taking his handful of pills, nor the turmeric.  The combination of me healing and recuperating elsewhere for three months, his minor injuries, and the new caregivers in his life no one knew or thought to follow our regimen.  By the time I returned home he had forgotten how to swallow pills and capsules.  Still needing blood pressure medication his caregivers have been hiding the small pill in his food.

VIRGIN COCONUT OIL

As with turmeric (studies have been inconclusive) I ran the idea of coconut oil by our doctor mentioning that I had read some encouraging articles on the subject.  With the medical community still at square one, Dr. Pleasant resolutely gave me the nod.  I assured him I would begin slowly. I have Ben spread it on toast for starters.  Unlike turmeric, it tastes good, just like coconut.  Ben, from the Philippines, smiled and said they use it in many ways back home.

Will it make a difference?  I don’t know.  Did turmeric make a difference with Ken taking it for nearly four years? The answer is the same one I gave the clinical trials doctors.  I don’t know because I had no basis for comparison, and even if it delayed AD’s progression for any amount of time I would not know for the same reason.  I suppose as his caregiver-wife I am always ready to try holistic remedies because it allows some hope.  Not necessarily hope for cure or restoration, or some gigantic breakthrough; it just keeps me involved allowing me to be a partner in possibly making Ken a little better, perhaps making a difference no matter how slight with this dreadful and mysterious illness. And I suppose it’s like doing whatever I can do to bring a little bit of my husband back home – just for me.

Questioning, experimenting, reading, learning and wondering helps me to keep my chin up and this is what works for me, and with our doctor’s input I continue to inch forward.  I do say in conclusion; please don’t try anything new at home — on your own.  First, check it out with your doctor.  He still knows best — even if he rolls his eyes.

 

Originally posted 2012-03-31 03:23:18.

IS THAT A GLOW AT THE END OF THE ALZHEIMER’S TUNNEL?

Light at the end of the tunnel

A new drug for cancer may be affective in treating Alzheimer's. Not a real light, but possibly a glow at the end of the tunnel

3/23/12 Please note that I don’t refer to anything as a “light” at the end of the Alzheimer’s tunnel because so far there is none.  Nor, as I have stated previously am I a medic of any sort, neither am I a scientist.  I read, and I often write about what I read. However, some research indicates that there may be a bit of new hope, a glimmer – a glow, in a cancer drug, bexarotene (Targretin) which has been successfully used for the past 13 years as a treatment for cutaneous T cell lymphomas.  There may be a possibility that it could erase some of the gook covering the brain of Alzheimer’s  victims.

OF MICE AND MEN WITH ALZHEIMER’S

I find it fascinating that scientific minds must do some kind of cross-overs — the same way classical singers sparkle when suddenly they show up with a No. 1 hit in the pop song arena.  How do they do that, and do scientists stay awake at night wondering how one successful drug might react in an entirely different area? 

 Apparently that’s what has happened with bexarotene, cancer, mice and Alzheimer’s.  These mice, mind you, are genetically engineered to become subject to Alzheimer’s disease.  Observed symptoms of the AD mice indicate they are forgetful as demonstrated by loss of natural instinctive traits such as using nearby materials for nesting.  It was discovered that these same mice having amyloid beta peptides (toxic protein fragments that gum up neurons leading to cell death and signs of forgetfulness) responded amazingly after treatment with bexarotene.

Following three days of the drug treatment, changes in brain imaging were observed.  The brain of the AD mouse showed considerable clearing.  Within six hours a single dose of bexarotene lowered the most toxic form of the peptides by 25%.  The mice, once encumbered by amyloid proteins, began to crinkle tissue for nest building.  Exciting for the mice and the scientists, but man’s brain is not the brain of a mouse.

BUT ALZHEIMER’S IS NOT CANCER

With this scrap of information caregivers and loved ones of AD patients are clamoring for their patients to be included in clinical trials – understandable.  However, a worst case scenario is the demand by some loved ones for immediate use of bexarotene on their patient.  In their desired efforts to “cure” Alzheimer’s desperate people often overlook the necessity of moving slowly.  Bexarotene has been approved by the FDA for treatment of a certain cancer. For use with AD it must be submitted once again to the FDA for approval in treating AD.  To use it off label would be irresponsible for both doctors and laymen no matter how anxious everyone is to find some kind of solution to reverse Alzheimer’s.

Furthermore, while we would heal our husbands, wives and others whose brains have been ravaged by this disease and would stop at nothing — money be hanged — reality must be the wisdom of decision.  Until bexarotene loses its patent for cancer treatment in a few years, the price could be prohibitive for most people, and it is highly unlikely to be covered by any insurance including Medicare. A quick survey indicated the cost of 30 pills is presently in the realm of $1,250.  Adding to the note of caution we all must remember that if we had this promising miracle drug in our possession, no one has a clue as to the amount and how often the treatment should be administered. 

In one article I read at The Alzheimer’s Reading Room bexatorene was compared to an eraser.  So it eliminates the gook – like cleaning the blackboard – but when the blackboard is clean does the eraser stop?  How much is too much? Could too much of a good thing be like lye or acid applied to the fragile fabric of the brain?  What then?  Oops?  Caution is a good thing.

STILL LOTS OF UNKNOWNS ABOUT THE BRAIN

The complexity of the brain must be considered.  Again, I repeat:  mouse brain is not the brain of man.  No doubt researchers and all of us who’s loved ones are stricken hope for a cure — that pie-in-the-sky drug — or some kind of medication – holistic or manufactured – which would be capable of clearing existing amyloid deposits is everyone’s fondest wish.  And in clearing the excess amyloid in the fluid-filled space between neurons what else would it to do to man’s brain?  “Continued caution,” insist some researchers as bexarotene may do more damage than good such as cause bollixing to the intricate biochemical functioning of the very areas of the brain which we all hope to repair.

SOMETHING FOR KEN?

Personally, my hope in bexarotene is for future use with generations to come.  Ken’s age and condition tell me that research medicine for him is too late.  Some medical people have said that even now any miraculous breakthrough would probably be ineffective for mid and severe cases of Alzheimer’s. They are probably right. He is now at the severe stage. 

I have no idea what an imaging of Ken’s brain would look like at this point, nor do I want to know.  He is who he has become and I am accepting. However, I recently read about treating Alzheimer’s with virgin coconut oil.  Hmmm.  I suppose where there’s life there’s still hope, and using a natural substance it’s something I can do.

 

Originally posted 2012-03-24 00:08:11.

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